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Posted 7/20/2020 7:44 PM (GMT 0)
Hello Everyone,
Newbie here.

3 months after RP PSA was .026.
6 weeks later it is now at .333.
Post Op Pathology found Gleason 4+3 cancer in seminal vessicles and a lymph node.
Prostate had a Gleason 9 tumor and numerous 4+3 instances.

My newly assigned oncologist wants to put me on hormones to lower the testosterone and radiate (30 treatments over 6 weeks)

I have gone on a strict Keto diet to cut sugar and have begun Ozone Therapy.
Hoping to beat this back using alternative treatments and good diet.
I'd welcome your opinions on going forward here.
Thanks,
Tony
Posted 7/20/2020 8:00 PM (GMT 0)
While it is exciting throwing the dice on neat - o 'alternative treatments' I would strongly suggest trying the standard ones as well since they actually do something, even though they are not so much fun.

Many (if not most) of us here follow a good diet and exercise program as well as those standard treatments. Ozone is a powerful "oxidant" - you know - what you might take "anti-oxidants" to get rid of. I would suggest you be very careful with that, even if you are killing mold or fire odor in a structure. That is a good use for ozone, though it will quickly rot/dissolve any rubber or plastic left exposed to it.

Otherwise, you have a very nasty G9 cancer. It moved out of your prostate to that lymph node (and likely others) before you had surgery. A long period of "androgen deprivation therapy/ hormone therapy" while getting serious radiation therapy may kill it or at least beat it back for a while. Skip that and your PSA is going to skyrocket as it grows.
Posted 7/20/2020 8:18 PM (GMT 0)
Hi Tony. I would take the approach that diet could help radiation and ADT be as effective as possible in continuing your necessary treatment. The same treatment would be advocated for your pathology even if your PSA had remained undetectable after surgery. All that the PSA rise does is change is the intent of the proposed treatment from adjuvant to salvage.

You didn't mention how many lymph nodes were removed in total for what was a G7 biopsy -- perhaps not that many. I would think that your RO will recommend the radiation be whole-pelvis. Did you have a bone scan as part of your workup?

Djin
Posted 7/20/2020 9:01 PM (GMT 0)
Hey Guys,
God bless you for your quick responses.
I'm not sure how many lymph nodes were sent I think it was only one.

I have had a bone scan. A complete scan and another PET scan scheduled on the 28th of Aug.

The oncologist has recommended radiation of the whole pelvis and hormone therapy.
I am so hoping to avoid this treatment
My incontinence is getting under control,(5 months after surgery) still totally ED. I've heard that radiation usually has a negative effect on both of these areas.
I'm scheduled for another PSA and a PET scan Aug 28th. Hoping the number at least stays the same and doesn't show a rise.

Your opinions are highly regarded and gratefully received!!
Tony
Posted 7/20/2020 9:59 PM (GMT 0)
Hello Tony,

I'm afraid you're not going to find many members here who will tell you what you are hoping to hear.

You have been served what I call the "three scoop crap sandwich" -- surgery, androgen deprivation, and radiation. That was on my menu too. I found the ADT (the hormones) to be the most flavorful ingredient. I think most guys do.

Unfortunately, I don't see any way to avoid the hormones. With Gleason 9 disease recurrent after surgery you can pretty much count on that. You can skip the radiation if you want to and move straight on to managing the disease rather than trying to cure it. Your ozone and keto won't hold it for long and the primary treatment for managing the disease is the hormones, off and on for more or less the rest of your life.

Most guys find the radiation pretty tolerable and a temporary course of ADT makes the radiation work better -- gives you a better chance of a cure. A cure isn't guaranteed in your risk category -- even with the radiation and the hormones -- but it represents your best chance of getting out from under.

Welcome to the forum. We're glad you found us but sorry you found yourself needing to look for us. Hope we can help.
Posted 7/20/2020 10:00 PM (GMT 0)
Diet may help keep cancer from starting, but once you have it I strongly recommend getting the traditional cancer treatments and do the SRT plus ADT. I know many on here (and elsewhere) think diet can cure cancer. I'm not one of them.
Posted 7/20/2020 10:20 PM (GMT 0)
Hi Tony,
I have cancer also but my numbers are better than yours. I just had seed implants and already regret it. There are just so many variants to try to cure cancer.

I would recommend that you follow the advice of the people here on this forum. Much knowledge and understanding here.

Cancer sucks and I hate it. I am dealing with what feels like prostatitis everyday and its miserable. I called the dr but of course no one called me back. Nothing to do but beat on the door till someone opens it.
Posted 7/20/2020 10:37 PM (GMT 0)
Tony--

You've gotten great advice, both in this forum and from your doctors. Follow it.

I just want to pipe in about the incontinence and the ED. Radiation oncologists prefer to wait until you've pretty much regained continence before starting radiation treatment. You could/should begin androgen deprivation therapy (hormone therapy) now -- that'll take the air out of the cancer's tires and make it more susceptible to radiation a month or so down the road.

Erectile function generally takes longer to recover than continence. A lot depends on whether some or all of the nerve bundles were spared in surgery -- if you don't know, ask your surgeon -- as well as your age and starting point, i.e. your pre-surgery erectile function. If erectile nerves were spared, you should already be on Viagra or Cialis to promote blood flow, and perhaps a pump

Keep us posted on your progress.
Posted 7/21/2020 12:52 AM (GMT 0)
GUYS,
It is so good to hear from all of you. I'm feeling more informed,really informed from the people who really know, and I am taking all of your advice to heart.
Thank you for your invaluable insight into this challenge we are all facing.I will keep you informed on how this develops. I'm seeing that diet and meditation may not be the magic bullet I was praying for.

I learned more about my situation in an afternoon here than I have for weeks and weeks of internet trolling.
Bless all of you.
Tony
Posted 7/21/2020 1:35 AM (GMT 0)
Tony, glad you are listening and learning. Hope you are not me. My radiation oncologist sent me for a scan and that is why I never used his services-bone mets were found. The Stampede trial results had just been published and I was put on the new gold standard treatment of Lupron +Zytiga +prednisone. My post op rising PSA stopped and I have been <0.01 for 30 months. It is very difficult but I have many brothers here for support. My choice was to live, side effects be gosh darned. I guaranty you there is no diet that will "cure" your cancer. A good diet will help your energy, mental state and weight. All those are needed to help fight your cancer. Good luck on your scans, treatment and learning.
Posted 7/21/2020 1:43 AM (GMT 0)
Tony look at my signature I also came out of RP detectable. it is important to exercise and have a good balanced diet but it's not gonna stop the cancer! You have one more last chance to try for a cure and that would be getting on ADT and having radiation. I was on ADT for 2 yrs suffered some pretty bad side effects still dealing with some of them but I have been undetectable for over 2 yrs now and as bad as the side effects were I'm positive it is a lot better then the alternative. This is JMHO Larry
Posted 7/21/2020 2:04 AM (GMT 0)
Tony - Sorry to read about your journey, you are off to a fast start.

In a perfect world, one would wait for continence to be 100% and all ED completely resolved before starting radiation treatments. However, your high risk situation seems to demand prompt attention that will not allow for “perfect”. Radiation (ART/SRT) does not make anything better and tends to stop progress on the surgery recovery thus you can’t just jump in right away after surgery. That being said, hormone therapy (ADT) will buy some more time as it usually stops the cancer progression quickly so radiation can be pushed off a couple of months then blast away hoping the problem is restricted to the area near the prostate and can be eliminated.

I wish there was a special vitamin, diet, or exercise routine that would get rid of this nasty disease but it doesn’t work that way. Coupled with the proper treatment schemes, they will help the process along and give you the best chance at living for a long time.
Posted 7/21/2020 3:32 AM (GMT 0)
Hey Guys,
Just got back from delivering CoQ10 to a fellow musician who is getting out of the hospital tomorrow morning. (Covid 19)

Hello Everyone,
It’s amazing to find more testimonials/informed opinions waiting for me here.
All of your posts are steeling me for the next round.

Thanks again fellas!
Tony
Posted 7/21/2020 5:38 PM (GMT 0)
Totally off topic but your name reminds me of Tony Roma ribs. Thanks for the memory.
Posted 7/22/2020 1:54 AM (GMT 0)

GoBucks said...
Totally off topic but your name reminds me of Tony Roma ribs. Thanks for the memory.


Tony Roma's in Saipan, an institution here since ever since, just went out of business last week. Covid victim.
Posted 7/22/2020 5:57 AM (GMT 0)
Hey Tony ... I had similar situation ... RP ... cancer came back quickly (within a year) .. Hormone Therapy and Radiation ... so far I've been good so far ...

Just try and keep a positive attitude, remember "thoughts become actions, actions become habits, and habits become your fortune" ...

Zzarth
Posted 7/22/2020 1:36 PM (GMT 0)
Tony, The combination of ADT and radiation is your best chance for a cure. Getting in shape to fight this beast with a heathy diet and plenty of exercise is the best way to reduce the side effects of treatment. I have a close friend following this advice and he feels and looks great. He credits the exercise to reducing the ADT to nothing more than an occasional hot flash.
Posted 7/24/2020 12:07 AM (GMT 0)
Hey Guys
I’m increasing my exercise (biking 50 miles a week)
I’ve gone to a plant based diet.
Pet Scan / PSA test Aug 28

Thanks again for your kind replies.
I think Sinatra was “Tony Roma” Private Eye way back in the day.
Those ribs are good!!
Tony
Posted 7/24/2020 5:15 AM (GMT 0)
Tony
You have a serious case of PC. It demands pretty much throwing everything at it.
Radiation was not bad for me at all. Praying for you for sure.
Posted 7/26/2020 12:55 PM (GMT 0)

Hello, Tony Rome ~

You have found a tremendous CIRCLE OF SUPPORT here!

We're here to encourage you, stand alongside you, and lend support.

No matter which medical treatments you pursue down the road, planned with your medical team --- we've got members here who can then share first-hand treatment experiences.

And that's the enduring power of that CIRCLE OF SUPPORT from our members ...

You've got a case with some complexities, as I do, as well.

You need to put together a medical team that puts together a proactive, directed, and targeted medical treatment plan for your case.

You need an expert oncologist leading the charge --- the "quarterback" of your medical team, so to speak.

My treatments began the very day I was diagnosed.

Many times, we have to become our own advocates, taking an aggressive and proactive approach.

My medical history is shown below my signature.

Are you near a major medical center?

Get your boxing gloves on ... time to find your inner "fighting spirit" ...

Post again, keep us in the loop ~ we ALL want the very best for you!


Sent with my best, from across the miles ~
CYCLONE ~ # Iowa State University
Posted 7/26/2020 1:49 PM (GMT 0)
Tony:

You are underestimating the seriousness of a G9 PC. There is a reason it's called ALTERNATIVE medicine. In fact, while a fine adjunct to standard treatment, by itself diet is not a TREATMENT.

Also, why are you waiting until 8/28 to do a scan???

Do it ASAP. Don't put it off. Hopefully, all your scans will be negative, or they will find it in a spot that is amenable to spot radiation. Anyway, I'm sorry as I know this post is somewhat alarming, but if you nail the G9 now with standard treatment, you could knock it down for MANY MANY YEARS.

Mel
Posted 7/28/2020 2:27 AM (GMT 0)
Tony,

As others have said, G9 is a serious diagnosis that demands attention. If you take a few months to find out if alternative therapies work, you might be letting the cancer progress to the point where it is untreatable. I wouldn't take that chance.
Posted 7/29/2020 9:00 PM (GMT 0)
Hello Friends,

Thanks again for all of your thoughtful replies.
I wanted to tell you that I now have an oncologist.

Today I went for PSA /Testosterone blood work. My PSA 90 days after surgery was .026, a month later it was .333.
I will soon find out where I'm at today. If it keeps going up I will start "the treatment"
The oncologist is suggesting Lupron and Radiation (30 treatments).

If it hasn't gone up I will test again Aug 28 with a PET scan.
Keeping you in the loop. It's great to have a group of people like this to share with.
God bless all of you!
Tony
Posted 7/29/2020 9:24 PM (GMT 0)
Our paths are the same. I had a pet scan and discovered a hot lymph node, but if there is one, there are probably a few micro hot nodes, so the treatment is to nuke the entire pelvic followed by 2 years of lupron. I just completed the 35 radiation sessions and had my second lupron injection. This is my last shot at a cure. Good luck!
Posted 7/29/2020 10:02 PM (GMT 0)
5Congrats on taking the initiative, Tony! The emphasis today is on joint decision-making between you and your doc(s). Become informed and ask questions. Be optimistic and boost your treatment with good nutrition and an exercise program.

Keep us posted and good luck!

Djin
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